Enjoying the Ride: Mitch talks about life, activism, advice, and living with Primary Progressive MS

As a follower of several MS-related blogs, I get to know people through their stories and words online. Doing so helps me to understand my own disease and to gain understanding of the different disease experiences of others. It is truly cathartic.

This has also been great in learning about progressive forms of MS. Talking to people who live it is more educational at times than reading the general information available online. With that said, I’d like you to meet Mitch, a person living with primary progressive MS, who blogs at Enjoying the Ride.

Mitch, welcome to MS HealthCentral. Please tell us a little bit about your MS diagnosis. Had you had symptoms for years before seeing the doctor? We are told that men generally delay seeking medical treatment. What were your early symptoms?

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Thank you so much for giving me the opportunity to talk about PPMS. I hope some people can benefit from my experience.

In the late winter of 2000, as I was jogging on my treadmill, I noticed a barely perceptible difference between my right foot and my left foot. My right foot quietly hit on the heel, and rolled to the toe as it is supposed to do while jogging. However, my left foot didn’t quietly go from heel to toe. It made a flapping sound. If I really concentrated I could make my left foot quietly go from heel to toe, heel to toe, but it didn't want to.

I didn't think a lot of it, but it did occur to me that I hadn't had a general physical in a long time. In the summer of 2000 I scheduled a physical, and mentioned this left foot problem to my doctor. He immediately suspected MS, and scheduled an MRI. The MRI showed only one small lesion in my brain. My general practitioner sent me off to a neurologist for further workup. Long story short – I went through two neurologists, a back surgeon, a new general practitioner, and a slew of tests before I got my diagnosis in October of 2001. I guess as MS diagnosis stories go, a year and a half from first presentation of symptoms to diagnosis isn't too bad.

That sounds like a long and complicated journey. How long did it take before you knew you had Primary progressive MS (PPMS) instead of the more common form of relapsing remitting MS (RRMS)? Who made that determination, you or your doctor?

I received an initial diagnosis of Primary Progressive MS. I think this is unusual. More commonly, a PPMS diagnosis only comes after a considerable period of observation. However, my neurologist, to his credit, didn't waste any time. Based on the characteristics of my lesion load (significant lesions in my cervical spine, few lesions in my brain), my symptom presentation (slow steady decline in leg function with nothing resembling a relapse or remission), and his clinical experience, he went straight to a diagnosis of PPMS. The passage of time has confirmed what others might have considered a premature diagnosis.

Your symptoms began in 2000 and you recently retired from fulltime work. What were the contributing factors to making that decision? Did MS play a part, and if yes, how so?

MS not only played a part, it was the leading man. As my disease progressed I required many adaptations at work. Toward the end, I was even traveling, often solo, all over the country in my iBot wheelchair. This worked well, but only up to a point. Eventually my symptoms grew to involve my upper body as well as my lower body, and fatigue and other issues become more common. My neurologist finally convinced me that working was no longer compatible with my primary goal of doing everything I could to combat this disease. Plus, I just wasn't able to do a very good job at my job any longer. It was time.

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The decision to end my career, which had been so important to me up to that point, was one of the most difficult decisions of my life. I became a retiree at the age of 45. It’s been about a year and a half, and I’m more certain than ever that it was the right decision.

Did your co-workers know that you have MS? Or did you try to keep it a secret?

For the first few months after my diagnosis, I only let a few of my closest work associates know. But as my symptoms grew, and the disease was no longer "invisible", I thought it best to simply disclose my diagnosis to anyone and everyone who wanted to know. This certainly took the pressure off in a sense. Keeping secrets and telling little white lies added stress to my life, which I didn't need. I don't advocate this approach for every individual. It depends on your personality, the degree of "visibility" of your disease, and your work situation.

You mention using an iBot which is a very specialized, super-wheelchair. How did you get that and can anybody get one?

Through the first seven years of my disease progression, I went from using no mobility aid, to using a cane, to forearm crutches, to a scooter. I eventually found myself using the scooter more and more. Scooters are not designed for full-time occupation. A wheelchair is. So I decided to shop for a wheelchair.

I think mobility companies know that disabled people tend to be insomniacs. If you watch TV in the middle of the night, you see all sorts of commercials for mobility devices. That's when I saw the commercial for the iBot. I then visited their website and signed up for an in-home demonstration. After the iBot representative came to my house and let me try one out, I informed my wife that I WOULD have one of these chairs, even though I didn't know how I would pay for it.

The next step was to become qualified for the iBot. You needed to be disabled enough to require a wheelchair, but still have enough hand and arm dexterity to operate it, and still have enough cognitive ability to work its complex control system. I passed that test, scrounged up the money, and ordered an iBot. About six weeks later I took delivery of the iBot, but only after my wife and I trained on it for about eight hours.

The iBot is like no other wheelchair. It has several modes of operation. In the standard mode, it operates like any other power wheelchair. In the four-wheel-drive mode, the iBot can handle uneven terrain and can climb sidewalk curbs. In the balance mode, the user is lifted up to eye level with most other standing people, while balancing on two wheels, much like a Segway. In the stair climbing mode…well, I think that is self-explanatory. If the stairs have good hand railings, I can climb them solo. If there are not good hand railings, then my wife assists me with the stair climbing process.

Only six months after purchasing the iBot I received a very disappointing notice from Independence Technology, the manufacturer. Because insurance companies were not reimbursing patients for iBot purchases, they were not selling enough units to make a profit, and were discontinuing sales and production. Luckily, they're supporting parts and labor for a period of five years. There are only about three years left on that five year commitment.

It will be a travesty if such an incredible device is offered to improve the lives of disabled people, and then it is taken away due to red tape. We need to find a way to save the iBot. A few of us are working on that. We're building a website. But right now you can check us out by typing "Save the IBot" into the search bar on Facebook.

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I dread the thought of having to give up my iBot in a few years when it can no longer be maintained. My quality of life will take a big hit.

I've put together several videos showing my adventures with the iBot. You can find these on the right-hand sidebar of my blog, www.enjoyingtheride.com

MS has greatly affected your legs. This seems to be true for each of the persons I know who have PPMS. How has it affected your hands or upper body? What adaptations have you needed to make as your abilities have changed?

For the first seven years of my disease progression I was fortunate to be affected only in the lower body. I first noticed upper body involvement when I was attempting to shuffle a deck of cards about two years ago. Sure enough, within a few months of that first observation, there was no denying that MS was affecting my upper body. For me, it is starting with fine motor skills in my hands. The smaller the muscles, the more likely they are to be affected. So far, my biceps are the least affected.

One of the more significant adaptations I've made is to start using voice recognition software with my computer. I can still type short sentences, but when I want to fill up a page, I use a program called Dragon NaturallySpeaking. The program can be frustrating at times, but it's better than not being able to type at all.

As the strength in my hands and arms continues to weaken I'll be making more adaptations in the future. This is the nature of PPMS. Unfortunately (sort of), I'm getting pretty good at the adaptation game.

In reading the stories on your blog, it seems that your wife is a wonderful caregiver. How do you each differentiate between your spousal relationship and your caregiving relationship? Or do you?

That's a difficult question. We have certain activities that are clearly caregiving. These are tasks my wife performs only because I am disabled. We still go out and have dinner and enjoy ourselves when time and energy allow. Those clearly aren't caregiving activities. But everything in between is difficult to assign to one category or another. Kim is both a wonderful life companion, and a patient and devoted caregiver. These two roles go hand in hand. I am blessed to have her.

They say hindsight is 20-20. Can you lend us the benefit of your hindsight? Is there anything you would have done differently, knowing what you know now?

I don’t have a lot of regrets, and I’m not one to focus on past mistakes, but yes, there are a couple of things I would do differently if I had another chance.

I’ve purchased three houses since my diagnosis. With the first two of those houses I did not take into account the possibility that I might later become significantly disabled. I don't know what I was thinking. Perhaps I was in denial. I should've bought a ranch when I was looking for that first home (post diagnosis). If I didn't develop a walking disability, then no harm done. Single level houses are fine for anyone. If I did develop a walking disability then I would already have a suitable home.

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Here’s one more. I am now what I would consider an MS activist. I am involved with several groups, and have developed relationships with many other MS patients, caregivers, and medical professionals. But I never really became an activist until I stopped working. I wish I had become involved in the MS community much earlier. I find it very rewarding.

I know exactly what you mean. The relationships which I’ve developed and nurtured, as well as the growing advocate work, are truly valuable and rewarding.

Let’s switch gears. As there are no proven effective treatments for PPMS, could you give us a brief run-down of the treatments you have tried over the years? Have any of them proven effective for you over time?

In order:

Novantrone- a cancer treatment, administered by IV infusion. This was a very ambitious approach for a newly diagnosed patient, but both my doctor and I agreed that we wanted to treat my MS very aggressively. I was on this drug for year, and it did not help at all.

Copaxone – an FDA approved treatment for relapsing remitting multiple sclerosis. This required a daily injection, which to me felt like a bee sting (some people don't find it as painful). I was on this drug for seven months, and it did not help at all.

Methotrexate – a rheumatoid arthritis treatment in pill form. I took this drug for one year, and it did not help at all.

Low-dose naltrexone – a pill first used to combat heroin addiction. I took this drug for one month, and it did not help at all.

Rituxan – a cancer treatment, administered by IV infusion. I took this drug for two years as part of a clinical trial for primary progressive MS. It's difficult to say for sure, but it seemed to slow my disease progression for the first year, but not for the second year. I continued with Rituxan for another year and one half after the conclusion of the clinical trial, but it did not help me at all.

CCSVI treatment – a new procedure that opens restrictions in the veins that drain the central nervous system. I received this angioplasty treatment in March of 2010. Although it has helped many MS patients, so far I've seen no positive effects from it.

Ampyra- a new pill that’s helps about 25% of MS patients with walking difficulties. I fell in the 75% that it doesn't help.

You may notice a consistent pattern in my treatment attempts. Other than perhaps a one-year plateau with my initial Rituxan treatment, nothing has slowed the steady march of my MS.

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What recommendations would you give to someone who is earlier on the path of their journey with PPMS? Any words of advice or comfort?

Here are a few pieces of advice:

It's okay to feel sorry for yourself, for about one day. Then you have to get beyond that. Everybody has something. Now you know what your something is.

Circle the wagons with your family and close friends. Lean on them for support. Let them help you.

Take care of those aspects of your health which you still have control over – things such as diet, whatever exercise you are capable of, and your emotional health.

Stay abreast of developments in the MS world, either drug treatments, other medical treatments, or nonmedical options that may be helpful. Remain open-minded. Don't become too emotionally invested in any particular option. Try what makes sense, and if it doesn't work then let it go and move on to the next idea.

Very few people adopt mobility aids sooner than they have to, but many people wait too long. If your disease progresses to the point where life could be made better by adopting a mobility aid such as a cane, crutches, or even a wheelchair, don't feel that you are in any way giving up. When it's time, getting help from a mobility aid can improve your life significantly.

If your spouse becomes your caregiver, remember that he or she is still your spouse. Go out of your way to occasionally remind him or her of that.

Enjoy each day as if it could be your last. This is sound advice even for the healthiest person among us.

Here's one last piece of comforting advice. Take things one day at a time, and you will be amazed at your capacity for inner strength, and how well you can deal with life's challenges. For what it's worth, despite everything I've been through and everything I’m still facing, I love my life, and can't wait to see what each day brings.

Very inspiring words, Mitch. I really appreciate that you’ve shared your story, thoughts, and wisdom with us. Thank you very much.